Newsletter July 2006
No.06/05 / July 2006|
Welcome to the Invest in ME Newsletter
for July 2006. |
Severe ME does not generally make headlines -
quite different from other 'mainstream' illnesses. Lives are lost and
generations consigned to insignificance. IiME again publish details this month
of further shocking treatment of people with ME and stories of severe ME. The
tragedy is that there is so much which ought to be published on this subject.
In the weeks following the International ME Conference in
London, in May, we have been
occupied with the dreadful story of Sophia Mirza whose death was caused by the
effects of ME.
Sophia's mother, Criona Wilson, has endured all
of the worst which the UK health system, and the psychiatric perception of ME in
the UK, can throw at her. She has now spent many weeks answering questions about
Sophia and has given her story to a number of journalists.
media pages show some of these links.
Criona has conducted herself with dignity and a
determination to see that justice is done.
The ME Conference and the story of Sophia have
brought media attention to the treatment, or lack of it, for people with ME -
which in the UK stands for myalgic encephalomyelitis (read
here). One can read about it in Dr. Byron Hyde's little red book
which we mentioned last month (see later news item).
Happy summer to all.
ME Stories 1 - Letter to Ian Gibson/Michael
After receiving an email from Julie we contacted
Dr. Ian Gibson and Mr. Michael Meacher, both MPs and both sitting on the Inquiry
into ME -
Dear Dr. Gibson and Mr. Meacher,
may be aware of the story of Sophia
Mirza who died of ME (the verdict from
the inquest was recently mentioned in
the New Scientist and BBC and ITV) -
How is it possible that a young woman
can be sectioned for having an illness
of organic origin?
What an indictment of the UK in the
And yet still this persecution
Yesterday Invest in ME had a letter
from one lady who suffers from ME and
had to endure the disgraceful tactics of
a DLA representative. Here is what she
have just been through the most
humiliating experience of my life at
the hands of a DLA medical examiner.
He was here 2 and a half hours and
told me to get rid of my "energise
DVD (from the charity ME Research
UK)", that ME was all due to
deconditioning and negative
behaviour patterns. He said the only
one keeping me in that bed is me.
The confusion is due to me not using
my brain, hearing problems due to
not using my ears, light
sensitivity due to not going out
in the light and so on and so forth.
Why should I expect a blue badge
when that would only discourage me
from walking, he said.
humiliated and ridiculed by someone
who was clearly a psychiatrist of
some description. He said he gave
seminars to students on "people like
He seemed to enjoy the whole
I have had ME/CFS and
fibromyalgia 12 years and this is
the first time I have applied,
having tried everything to get
better on my own. I hope research
will stop this kind of thing from
How on earth can this be allowed to
occur? I think it appalling that we
allow people to die from ME. How on
earth can we call ourselves a civilised
society when even the walking dead are
treated in this way.
Good luck with you Inquiry into ME -
which we all appreciate. The stories
such as the
above indicate how overdue proper
funding and treatment is in this
An unbelievable story of UK 2006 society - except that this is occurring all of
educated on the difference.
|As many may have seen
or heard the inquest into the death of Sophia Mirza recorded a
verdict of death as
renal failure due to dehydration arising as a result of CFS
As the two pathologists could not agree whether to
use CFS, ME or ME/CFS then CFS was used in the verdict. People have
still to be
Sophia's mother, Criona Wilson, was interviewed
by several television channels and newspapers/magazines.
Meridian ITV devoted 2 programmes to the story
with reporter Stacey Poole again highlighting the tragedy of ME. You can see the Meridian ITV interview with
The Inquest summary is
here - and we have now translated that into Spanish -
Sophia's story has been translated into German
ME Stories - 2
One would hope that what happened to Sophia couldn't happen again.
Yet from Norway we
have the story of Birgitte as told by her husband Leiv -
proving that even the wealthiest of countries fall far short of provision of
humane treatment for people with ME -
was put into the nursing home
in August 2004. The head nurse received a treatment manual for seriously
sick ME patients (written by the Norwegian
ME organization) and promised to follow this.
At this point in time Birgitte
was able to sit in a wheel chair, could use the
toilet and could move her arms and legs.
was put under conditions of extreme stress. Due to a total lack
of knowledge and competence of this illness the nurses and the nursing home doctor still think she has a psychiatric
illness. The treatment manual from the Norwegian ME organisation is, therefore, not used and the patient
gets more and more ill."
Read more of Leiv's story
Those who have purchased a copy ME Conference DVD
will probably have seen the story of the Krisner family in Norway where all
three children have ME.
IiME now have this story on our web site with a
different subtitle format for the translation.
The DVD of the Invest in ME - ME Conference
2006 has now been sold to customers in UK, Ireland, Norway, Denmark, Sweden,
Germany, Holland, France, Israel, USA, Canada, Australia and New Zealand. The initial batch of the DVD
set has almost been sold out.
A copy of the DVD has been also sent to Dr. Ian
Gibson as evidence for his parliamentary inquiry into ME.
Conference feedback -
struck me most about all the speakers was their genuine commitment
to their patients, research or charity work. Although all working in
slightly different areas, they all share one common bond…..working
towards finding the cause and cure for M.E."
The price of the
conference film at £13 plus postage and packaging for UK delivery, slightly more for
IiME are now working on a short version which we hope
will be available for MPs and GPs and other specialists in the UK and abroad
who, initially, may not feel they have time to go through six and a half hours
of conference material. We are
also looking into producing an audio version for those who do not have a
computer or are visually impaired.
To purchase or to obtain more details
A new website has been created by Dr.
Ian Gibson's team to support the
Group on Scientific research into Myalgic Encephalomyelitis.
This site contains details of all meetings
including the minutes from those meetings.
The Gibson Inquiry news page is
ME Stories - 3
Another story to add
to the ranks filling our pages -
am basically going untreated now as my GP has
referred me to a psychiatrist as he is unsure of
what anti-depressant I should be taking. I am
hoping and am told they have patients with this
condition and will possibly know what has worked
on others that might help me gain some part of
my life back."
Thanks to Cynthia for submitting this. Read more of Cynthia's story
This month we feature Holland.
Frank Twisk has kindly provided
some information on life in Holland -
We hope and wish to make contact with
more international groups in the coming months so please contact us
if you would like to be included in our Guest groups -
email us here.
ME Stories - 4
wife died in 2003. On her death certificate ME was stated as a cause of death -
if it had been the right treatment, by that time
it was too late: so many years of neglect,
disbelief, wrong medication, wrong diagnoses; so
many times referred to psychiatrists, who to a
man sent her away because they couldn’t find
anything wrong – with a prescription for an
anti-depressant just in case…."
IiME recently held a Have a Cuppa event in Hampshire. £156 was
raised and a cheque was delivered to ME Research UK. If you wish to
organise such an event feel free to contact IiME for any support we
Dr. Byron Hyde has been refining and updating his red booklet which he made
especially for the ME
Conference and the latest version may always be
found at his Nightingale Foundation in Canada - see
www.nightingale.ca. We hope
to be able to show an updated version soon and the orginal, abridged
version is still